Side effects from Keppra?

Posted by annabcd @annabcd, Mar 6, 2023

This is about my husband. He started having seizure like episodes four months ago once or twice a month that lasted 5-20 minutes. After trying to convince doctors these weren't anxiety attacks they did an EEG which was interrupted by a seizure like episode. They immediately got him on Keppra without confirming epilepsy and since then he's been completely out of it, has memory loss, slurs his speech, uneven pupils sometimes and others he smells something burning, cough, panic, sees flashing lights and colors,loses contact with the environment and more. He has stopped taking it since Saturday morning and he's much more conscious but still had episodes mostly with his head hurting, panic, burning smell and getting super sleepy when this happens. Memory is getting better.

Does anyone know if all of these are normal as far as bad side effects of keppra go and if so when they will go away?

Interested in more discussions like this? Go to the Epilepsy & Seizures Support Group.

@royanthony

Hi Lisa, we've communicated back to December 24th of last year regarding sleep. So, this is just an update. My insurance company finally agreed to partially pay for Ambien, the Brand name of Zolpidem, which I've been taking for years. I got a call from my pharmacist asking if I really want to make the change? Ambien cost is $120 for 30 tablets which includes my co-pay. With Zolpidem, I pay $11.18 with tax for 30 tablets. So, I guess it's still the Z for me. I hope you enjoy your weekend.

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I was wrong on the $120 I stated above. The cost at my pharmacy was $160 and THAT included my Co-Pay.

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@motobee

I take Keppra twice a day and so far no negative reactions.

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My daughter was just removed from Keppra because we were concerned it was worsening her mood/suicidality. Lacosamide did not control her seizures alone but when they added Briviact, she improved. Briviact is similar to Keppra and we are hoping for less side effects.

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@royanthony

Hi Lisa, we've communicated back to December 24th of last year regarding sleep. So, this is just an update. My insurance company finally agreed to partially pay for Ambien, the Brand name of Zolpidem, which I've been taking for years. I got a call from my pharmacist asking if I really want to make the change? Ambien cost is $120 for 30 tablets which includes my co-pay. With Zolpidem, I pay $11.18 with tax for 30 tablets. So, I guess it's still the Z for me. I hope you enjoy your weekend.

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Have you tried searching for a coupon or copay assistance? It looks like GoodRx has a deal.
https://www.goodrx.com/ambien

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@royanthony

I've been taking it for 10+ years and have had no issues with anger. Reading comments on other support groups I've seen that it can affect sleep. I have trouble sleeping.

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I’ve been taking extended release Keppra for 8 years. I’m a bit sleepier and more tired than I would expect but it controls the seizures. Why do I take extended release? I had an order from the neurologist to get my Keppra level checked. The person who drew my blood , looked at the order and asked about my seizures. I said I was still having them. She said that she had epilepsy and found that extended release Keppra worked better. I talked to the doctor. Got a new prescription and the problem was solved.

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@motobee

I take Keppra twice a day and so far no negative reactions.

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Taking it 5 years and lethargy at highest dose but better at lower dose (4000 daily vs 2000 daily). Am on two other meds as well and still trying to get seizure-free.

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@dooleysis

Taking it 5 years and lethargy at highest dose but better at lower dose (4000 daily vs 2000 daily). Am on two other meds as well and still trying to get seizure-free.

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Hi, @dooleysis - welcome to Mayo Clinic Connect. Sounds like you and your doctor found a dosage of levetiracetam (Keppra) that worked to minimize the lethargy, which is great. What impact on your symptoms have you seen with taking it for 5 years?

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@motobee

I take Keppra twice a day and so far no negative reactions.

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I’ve been on Keppra 2x a day for four months. Originally started at 250 2x a day. Doubled to 500 2x a day, and currently sitting at 750 2x mg wise. I’ve had four grand mal seizures since the beginning of this year, every month. I’m grateful to the meds for maybe keeping me somewhat at bay but I wish there was something to stop these major ones that keep on landing me in the hospital and out of work.

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@motobee

I take Keppra twice a day and so far no negative reactions.

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@boymama93
Has your physician mentioned increasing the dose again? It may not help until you are taking 1500 mg twice a day. If it doesn't help at an increased dose the doctor may want to add on another medication. I took 5 different meds at one time.
Do you have any type of focal seizures or other generalized seizures?
Have you tried any other seizure meds?
If they decide you have drug resistant epilepsy going to an epilepsy and treated by a team of doctors, lead by an epileptologist would probably be your best option.
Wishing you the best,
Jake

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@royanthony

Being raged and angry is not uncommon for Keppra. This can be researched easily. The term I've always heard is "Keppra Rage" I don't think I've experienced such.

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Keppra 500 x2 daily Dr. warns strict adherence necessary.
He also suggested that B6 mitigates the "rage" that manifested in me as an "edginess".
According to my spouse, it worked.

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@motobee

I take Keppra twice a day and so far no negative reactions.

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I have been taking keppra for a year now. My current dose is 3,000mg of extended release every day. I have had anywhere from mild seizues to a Grand mal seizure which nearly took my life. I also have advanced alzheimers. I have not had one seizure since starting keppra. My ability to function on my own again is all thanks to keppra. For me it has been a miracle drug ( with side effects). I don't know how much time the drug will buy me but I will enjoy the time I have been given back.

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